National ME organisations respond to DWP guidance

STATEMENT BY NATIONAL ME ORGANISATIONS ON DWP CFS/ME GUIDANCE DOCUMENT (VERSION 9)

We
are pleased that the DWP has acknowledged that there has been a 'black
hole' with ME/CFS, resulting in many decision makers/adjudicators
having trouble making correct allocations, and have agreed to address
this. 


We unanimously reject version 9 of
the ME/CFS Guideline, and deem it not fit for purpose. We feel that
despite everyone’s hopes, even after much consultation, the DWP have
made merely minor/limited changes to version 8 of the guideline, which
was indisputably rejected by all involved ME Organisations in July
2006.

The guideline
fails to adequately describe the different levels of severity. The
minimum included in this guideline should be the descriptions used in
the CMO Report, with added targeted information specific to the
personal and mobility needs of the sufferer, needed by the decision
makers/adjudication officers (see attached).

The
DWP needs to accept Consultant/GP letters, and, as discussed in our
meeting, to adopt the use of a functionality scale, such as the
Karnofsky scale to show the level of disability of the claimants.

The
guideline also fails to adequately describe the fluctuating nature of
this illness, which makes the filling in, and assessment of, the
benefits claim forms so difficult. Nor does the guideline deal with
relapses, which may mean that a person can go from mild/moderate/severe
to severely/very severely affected for months/years.

PHYSICAL NATURE OF ME

  • Although we are pleased that the guideline states that the condition is
    "physical", therefore entitling people with ME to high care and
    mobility, it fails to mention that ME/CFS is classified by the World
    Health Organisation (ICD10: G93.3) as a neurological disease, and
    accepted as such by the Department of Health.
  • The guideline grossly understates the seriousness, chronicity and
    progressive nature of this organic condition, especially for the
    severely affected, which make up 25% of the ME/CFS population (approx.
    60,000). This will lead to decision makers/adjudication officers having
    difficulty making correct assessments to entitlement. Previous studies
    found that substantial improvement is uncommon (documented as less than
    6%), and full recovery is rare. There is also no acknowledgement that
    for some the condition can be fatal.

MANAGEMENT AND TREATMENT

The guideline fails to acknowledge there is no cure for ME/CFS, nor a management/treatment suitable for all.

The
guideline recommends/describes the blanket use of cognitive behaviour
therapy (CBT) and graded exercise therapy (GET) as the treatments of
first choice for ME/CFS when:-

  • The positive effects of Graded Exercise Therapy are overstated – there
    is a great deal of clinical and patient evidence (patient surveys on
    over 3000 patients) showing GET to be harmful/unhelpful in a high
    proportion of patients who tried this therapy, especially those who are
    severely affected. There is also much bio-medical research showing that
    the bodies of people with ME/CFS react differently/adversely to
    exercise, making GET potentially harmful/dangerous.
  • The research evidence base for GET in mildly and mildly/moderately
    affected ambulant patients is small and unreliable, based on flawed
    criteria, and it is non-existent for the severely affected and
    children/young people with ME/CFS, the only evidence available is
    patient evidence, showing that GET is unhelpful/harmful.
  • There is no evidence that GET “is helpful in the majority of adult
    ambulant patients" nor that CBT “is helpful in the majority of adult
    and adolescent ambulant patients.”
  • The wording relating to the Cognitive Behavioural Therapy section is
    offensive in that it implies that abnormal illness beliefs are a
    maintaining/causative factor, and that patients are not really ill.
  • ME/CFS is not cured by CBT, and many patient surveys show that CBT,
    especially if used alongside GET, can be potentially harmful to those
    who have neurological ME. Even the MRC neuro-ethics committee has
    expressed concern over the use of CBT. For those who do find CBT
    helpful, there is limited and conflicting research evidence over long
    term benefits with many showing it is only effective for a short time.

THE MODERATELY AFFECTED ME/CFS SUFFERER

Many
of the moderately affected are likely to have impaired ability to
maintain hygiene and nutrition and are likely to need some help with
personal care and food preparation. Also many moderately affected
patients would have a great deal of difficulty consistently being able
to walk 100m, especially without an increase in symptoms/setback, and
some people may have severe limitations in walking this distance
without rest or aids.

THE SEVERELY AFFECTED ME/CFS SUFFERER

  • We feel that the language used in the guideline to describe ME/CFS does
    not adequately portray just how seriously ill and disabled those with
    severe ME/CFS are. The decision makers/adjudication officers therefore
    have not been provided with a true description of the level of
    disability experienced by these patients, nor their multiple and
    complex personal care and mobility needs.
  • Severely affected ME/CFS sufferers (people who are house/bed-bound
    and/or tube/PEG fed) have to rely on carers for all their needs. They
    require disability aids such as wheelchairs, stair lifts, hoists and
    similar equipment, often specially adapted, in order to maintain the
    basic needs of their daily lives.
  • Severely affected ME/CFS sufferers are severely restricted in their
    ability to walk. They may need to be supported to walk even a few
    steps, if able, to the bathroom, or use a wheelchair, or they may use a
    commode/incontinence pads. If they leave the house they would be unable
    to do so without a wheelchair, and would usually require assistance.
  • The severely affected need help with their personal needs eg. washing,
    toileting, food preparation/feeding, drinks, housework and medication.
    They will be unable to make/change their beds or do washing, which may
    often be necessary due to incontinence or menstruation, often at night.
  • The severely affected will require care 24/7. With the chronic pain,
    frequent micturition/nocturia and sleep dysfunction – often sleep
    reversal – care during the night is standard/routine and is often
    extensive/prolonged, meaning the carer gets very disrupted, little, or
    no sleep.
  • The
    severely affected will usually have significant cognitive impairment,
    and this impacts on all aspects of their lives, and reinforces their
    need for 24/7 care.

The
above points highlight some of the short-comings of the guidelines,
which rely heavily on the psychological approach to this illness
(especially in the areas of management/treatment, and include erroneous
statements such as a high prevalence of psychiatric co-morbidity, when
research shows that it is only present in about a third of patients,
which is similar to that found in other chronic organic conditions).
This is potentially very bad news for patients claiming DLA, and for
DWP staff whose wish is to make the correct allocation first time, and
will have difficulty if using this guideline. This concern is
heightened if NICE adopts a similarly intransigent attitude in making
changes to their draft guidelines, which have also been unanimously
rejected by ME organisations.

We – an alliance of National ME Organisations and Medical Professionals
involved in the consultation process with the DWP – require that the
DWP look again at the sections commented upon and instigate an
essential rewrite of the guideline, so that ME/CFS sufferers receive
the correct allocation of benefits they are entitled to.

Signed by:

Blue Ribbon for the Awareness of Myalgic Encephalomyelitis (BRAME)
The 25% M.E. Group (for people severely affected by ME)
The ME Association
Action For ME
The Young ME Sufferers Trust
Dr Terry Mitchell
Dr Nigel Speight
Professor Basant Puri

ME/CFS
is a very complex and debilitating illness. The symptoms and illness
fluctuate, day by day and often hour by hour. There is a prevalence of
relapses, and sufferers often move between levels of severity,
sometimes for long periods of time, whilst others can remain severely
affected for years/decades
.

Mildly Affected

The
person would normally be able to wash, dress, bathe, use the toilet and
get up and down stairs without difficulty. The ability to plan a meal
is unlikely to be impaired and the tasks involved in preparing and
cooking food are unlikely to be restricted for the majority of the
time. The ability to walk long distances may be reduced, but the person
is likely to be able to walk short distances on an unrestricted basis
most of the time. Their judgement, thought processes and means of
communicating, are usually not affected to the extent that they would
be unable to find their way around in familiar and unfamiliar places.
Whilst some may be able to continue with some work/education, they are
likely to have stopped all leisure and social pursuits, often needing
to take days off. Most will use the weekend to rest in order to cope
with the week.

Moderately Affected

Those
with a moderate level of disability will have reduced mobility and are
restricted in all activities of daily living. They would be expected to
be able to manage some personal care/hygiene and preparation of
food/drink without help from another for some, or most, of the time.
Tasks will often/usually take longer than normal, and be fragmented
throughout the day/week, they will be followed by a period of rest.
Levels of fatigue and symptom severity may vary during the day, or from
day to day, this will also depend on whether they are classed as
mild/moderate or moderate/severe. They will experience some degree of
cognitive dysfunction, and for some this could be significant. They
have usually stopped work/education and require rest periods, often
sleeping in the afternoon for one or two hours. Sleep quality at night
is generally poor and disturbed. The ability to walk more than a
hundred metres consistently is likely to be restricted in moderate
cases.

Severely Affected

Those
with a severe/very severe level of disability will only be able at most
to carry out minimal daily tasks eg. face washing and cleaning teeth,
and will need help with all personal care and preparation of
food/drinks. They will spend most of the day house/bedbound or
otherwise immobile. They will be wheelchair dependent due to severe
restriction in their ability to walk, there may be clinically evident
muscle wasting. They may need aids such as a hoist and stair lift.
There is a requirement for supervision at home and out of doors, due to
the significant impairment of both physical and cognitive functioning.
Severe sufferers require 24-hour care, particularly due to the
sufferers’ significantly disturbed sleep pattern. They require general
care both day and night; preparing meals/drinks, tube/PEG feeding,
medication and toileting (due to frequent micturition, nocturia,
menstruation). Symptom control is difficult as ME/CFS sufferers often
have new sensitivities to medications. They are usually unable to
tolerate noise and are extremely sensitive to light. They are also
sensitive to touch and chemicals/smells.

Many severe sufferers of ME/CFS may be much more disabled and dependent than that described above, many needing to be turned.

Many
sufferers, of all severity levels, experience pain, often severe, often
unrelenting, and not always alleviated by analgesics. Some sufferers
also have other intrusive symptoms eg. blackouts, paraesthesiae,
stroke-like symptoms etc.

ENDS